Sandi Update --8/18/17

Scott and I just got home from seeing Sandi at the hospital. She is doing a little better as she is off oxygen support and breathing on her own. She was awake and more with it than the past several days as well. She still has the catheter in her and still is being monitored for any possible heart issue. She has been fever free so far today.

The x-rays came back with no sign of a break. She does have a dark area on her right ribcage indicating that she has a bruise. They do not believe that the bruise extends inward to her lung nor does it appear that her heart is bruised. All that is very good news. It also means that I did not make things worse for her trying to get her up off the floor. The bruise is causing her significant pain, but there is no sign that I did anything to make that worse or cause any other injury.

We also now know for sure that the shower I helped her take after the fall was not responsible for her fever and everything else since then. I was very worried I had not done something correctly with her port in trying to cover it from the water and had caused what she is going through now.

The tests have come back and she does have a major bacterial blood infection. It is worse than the last one. We don't know if this is the staph infection that was not completely defeated and came back with a vengeance or something new. There is a very good chance that not only has the infection spread to her major organs (which they believe they can stop and clear) it has also spread to her tri-fusion port. If that has happened --they are running tests for that--there is going to be a major problem as the port would have to be removed. It also would seem that such a situation would preclude trying to put another one into her until the infection was completely cleared.

While they run tests and try to decide what to do about that, they are running massive amounts of various antibiotics into her along with saline fluids and platelets. She probably is going to have a blood transfusion of multiple units over the weekend. They also hope to get her out of the bed at some point this afternoon and have her walk a little bit with the therapists.

So, at this point, clearly there are things to worry about, but I feel a little better about her situation. Seeing her awake and oriented was a major relief. She has clearly been through a lot since Tuesday evening, but I think she is doing a little bit better.

Sandi is Home

Sandi is home. Still on the liquid only diet and very annoyed about that. We see the cancer folks on Thursday for blood work and an office visit.

Sandi at Rehab--Day 7

Earlier today Scott and I went down to the hospital and spent some time with Sandi. While there the doctor and the social worker popped in for a very brief visit. The plan is to release her next Tuesday.

Beyond that we don't know yet.

She will either come home for a day or two or will go straight to chemo. Since the tumors on the scalp are back and growing with a vengeance and her sinus tumor is clearly growing making things worse again (and those are the tumors we know about and can gauge things off of), she would much prefer to go straight over to the South Tower of Building A and get the chemo started again. Whether the doctors and Medicare will allow that to happen remains to be seen. We have made it very clear to all involved we would like to get the chemo started again asap. In just the two weeks the scalp tumors that could barely be seen and almost appeared to be gone are now was bigger across as well as vertically than they ever were before the first round of the aborted chemo. Pink in color, they are now bigger than a quarter and stand out on the surface of her scalp like eyes on the back of her skull.

Time is clearly of the essence based on what we can see and her symptoms. She is at least two weeks late on the chemo, if not three, at this point, based on the previous treatment plan. With her, when things get delayed the cancers explode in growth and run wild like a spark in the wilderness that becomes a raging inferno. This also gives the cancers more time to mutate and this resist the current chemo. So, they really do need to get on with things as soon as they possible can.

She thinks she is ready now. Considering the fact that she is still on a liquid diet only and can not have hot tea or soda (which is making her crazy) as well as the fact that she is shaky on the walker, I don't think she is ready. I think she is better than when she started last Friday. Will she be ready by Tuesday? I don't know? Is she ready for chemo? I have no idea.

I do see what is happening and I realize the situation they have to consider. It is because I do see what is happening as well as knowing her history, I worry.

Sandi at Rehab--Day 6

Rehab continues and might be a bit better today as staff members apparently have communicated to each other and straightened out some things. She is back getting another two units of blood by transfusion. That means she made it a week without a transfusion. Way better than the 48 hours or less that was much of the last four weeks.

Sandi at Rehab--Day 5

Been out and about to the house with another load and then to the hospital where we spent about an hour and a half  with Sandi. Things are progressing. They will continue to evaluate her each day and then have a staff meeting Thursday morning to discuss the plan for her next week. We should know something by noon on Thursday. After five full weeks in the hospital and five days of rehab and a host of issues there, she is more than ready to get home. Whether she is medically ready is a far different question.

Sandi at Rehab--Day 3

Today was special as Jacob Ryan came down to spend time with his grandmother. When we all got to the hospital early this afternoon we found Sandi dressed and sitting up for the first time in nearly a month. She was in her room and between therapy sessions so we got almost an hour with her.  Mentally she was fully present though at times she was clearly flustered for a word and tended to repeat some things. It was clear that today was better than last Friday so hopefully that will continue.

Baby and grandmother had a good visit as did the rest of us. Her therapist told me Sandi is doing fairly well. She is shaky using the walker so they have her using a guide belt (the pink belt in the picture below) and the therapist makes sure to hang on to her as they go down the hall very slowly. Slow is fine with me and my cane so I went with them to the huge physical training room. Other than her walking ability, the therapist said that everyone is very pleased with how well she is doing after everything she has been through.

Her main complaint, beyond the liquid diet that she absolutely hates, is the fact she gets cold. They limit patients to two blankets provided by the hospital. She can have more if we supply them, so we brought to the hospital three more blankets that she wanted. We also brought clothes for five days so she is set for that. I offered to bring a couple more caps as she has some here, but she is happy with the yellow one she made awhile back. As it happened, she deliberately took it with her when going to the hospital as she was worried her head would get cold and had expected her hair to go away very quickly once chemo started. Because they also gave her steroids with the chemo, it took about ten days longer to fall out than expected.

At this point, things seem to be going well. Hopefully, that will continue.

Sandi at Rehab--Day 2

Talked to her earlier today and she was in good spirits and doing as well as can be expected at this point. Spent a lot of time with various therapists and all seemed to have gone okay. Beyond the fact she is still on the heavily restricted liquid diet, her main complaint was that she was cold and wanted some extra blankets brought from home as they limited her to two blankets and that was not enough.

Sandi in Rehab

Been a long and hard day but, Sandi is now in the rehab unit at the hospital. It is not home, but it is a step closer.

Sandi Update 6/28/17

Back home after making a run to the house and then going to see Sandi at the hospital. Today is a milestone that we could have done without as she has been hospitalized for a month as of today. She had a bit of a rocky afternoon yesterday leading up to the MRI. They did that and for awhile she was a bit better, but apparently she was again rather confused overnight. That extended into this morning and continued while we were there. A conversation with her today was a bit of a roller coaster as she kind do went in and out. It is very shard to explain in words, but those involved with her care repeatedly assured me what Sandi is doing is normal and not anything to get upset over.

The brain wave test apparently indicated everything was okay. The MRI was thought to be "good" as, though it showed the extensive damage from 2010 and 2011 when she had a number of strokes, it did not show new damage. That confirms the idea she did not have a stroke. If she had a seizure last week it did not do anything that was strong enough to do damage. That is also very good news.

The plan is to move her to rehab as soon as possible where she will be from ten days to two weeks. Medicare has to approve this so physical therapy and occupational therapists will come work with her today to write reports and submit them to Medicare. Everyone involved believes there is no question that Medicare will approve her moving to rehab. Apparently there is an inpatient rehab unit at Medical City Dallas Hospital that opened in the last year so they would move her there. They really want to get her there tomorrow, but I think it is more likely she would not move until Friday.

I am not thrilled about her having to change rooms again as she is still upset over the last move when she had to change rooms due to Medicare rules. She is still upset over that and feels like things were lost. that move comes up multiple times each visit. So, moving her again could trigger a new round of that complaint though she seems to understand that such a move will be necessary.

Once she successfully completed rehab, they would then move her back to the main hospital and do another round of chemo. This means, if everything goes right, she is most likely looking at another three weeks in the hospital. If I can orchestrate things here well enough, when she comes home she would go to the house and not back here to the apartment. I'd still have to pay out the lease till August 21st , but being on the ground floor would help her a lot.

Hospital Bound

We got the call a little while ago and are about to head out to Medical City Dallas Hospital so that Sandi can start the new chemo later today. Considering how much worse she has gotten the last several days they need her in asap.

If you have a moment to think about her in whatever way works for you please do so.

CT Scan Today

Assuming we survived the trip down, by the time you read this post we should be at Texas Oncology at Medical City Dallas Hospital. Sandi is scheduled for a CT Scan of her head with specific emphasis on the sinuses. They are trying to determine the cause of her issues and to rule out cancer making another ugly appearance. Odds are in favor of cancer according to her new Ear, Nose, And Throat doctor, but we hope not. 

We will not have the results today. When we will I have no idea. If you will, spare a moment for her today and think a good thought or two. She has had a hell of time of it these last several weeks.

Doctor Day

As this post appears this hour, if things have gone right, we are at Texas Oncology at Medical City Dallas Hospital awaiting Sandi's scheduled appointments for blood work and a visit with her doctor. The past week she has not felt very good and is back sleeping in the afternoon for several hours each day. In the past, this has often meant bad things were going on.

I am sure the time change has not helped as it has really thrown both of us way off track at night. I know she is having a very tough time with her allergies. So, hopefully, nothing else is afoot.

It better not be. Not just for her. For me too. I am exhausted and stressed out. Yesterday was the two month point of my Mom passing. It was like it was happening all over again. I was a basket case. I am coping with everything as best as I can. I just can't deal with a crisis with Sandi too right now.

Sandi Yesterday at Infusion

Yesterday while we were at infusion Sandi asked me to take a picture of her. This was pretty rare, but I was more than willing to do so by way of her cell phone. She wasn't in the shape to make her phone do whatever it does to get a picture to me until this morning. As you can see below the sun was starting to stream into the room as the blinds could not be fully closed. This was about two hours in when the drugs had started hitting her system hard causing her to be cold and sleepy.

Cancer Doc Day

By the time this post appears, we will be on the way to Texas Oncology at Medical City Dallas Hospital. Sandi has an appointment to do blood work, have her port flushed, and see the doctor. Today, we are supposed to get the results of the PET Scan.

Sandi's cancer fight is an elaborate game of whack a mole. She has tumor sites everywhere from head to toe. So, they do things and some tumors shrink and others grow. Then, things change and the original growers go away and new ones pop up.

Best case scenario is that the spinal tumor that was radiated all of July has shrunk and the others in various places have not grown very much. In that case, they may or may not restart chemo today.

Worst case scenario is the radiation did not work AND other sites have also exploded in growth. They would restart chemo with that too though it most likely would be a more experimental type of chemo.

Her chemo options are increasingly limited as her body build up a tolerance and then the chemo stops working.


So, we just don't know. We both are worried and upset though she handles all this far better than I do.

Between all that and the financial stress as everything is past due and we are facing cutoff of power and such in a week or so the stress around here is pretty damn grim.

So, if you have a moment this morning, please keep a good thought in mind for us. Thank you.

PET Scan Completed

After a more than 90 minute delay before they could find a nurse to access her port as well as issues with her blood sugar that resulted in a drop to 49 before they got that addressed, they finally got the PET Scan done. Hopefully, when we get the results late next week we will get good news.

We are both exhausted and hurting. Sandi because of all the time on the table. Me because of evil institutional chairs and falling twice. I also had to push her in a wheelchair through much of the hospital as they had no one available to help us.

Medical News

Sandi had her appointment with the cancer doc folks this morning. Blood work seems to indicate things are relatively stable. They did a minor in office procedure and will be running some tests to make sure what was removed was/is nothing. All in all they seem pleased at how she is doing and recovering from the radiation treatments.

The current plan is to have her do a PET Scan as soon as possible. Hopefully, that will happen in about two weeks.

In a month she is back to see the cancer doctor and get everything checked and to discuss the planned treatment from that point.

While we don't have any clue what the cancers are doing right now, everything they can assess seems to indicate things are stable and she is regaining her strength. 

Sandi's Latest Creations: Angel Rings

As we grind closer to another visit with her cancer doctor and probably a resumption of chemotherapy, Sandi has been working on angel rings. She now has them for sale over at her iOffer store along with lots of other stuff. These sell for $5.00 each and that includes shipping. You can order here and pay through the paypal widget over to the left or there at iOffer.

We have a mandatory monthly installment payment of $270 due in just a few days to Texas Oncology at Medical City Dallas Hospital so it would really be nice to sell some things as we do not have any of it.

23 Done, 2 More

This morning Sandi has completed her 23rd radiation treatment. We also met with the radiation doctor as we do each Monday. He is very pleased at how well she has done so far.

She has tomorrow and Wednesday treatments to do. After the deal on Wednesday she will be given discharge instructions. Then, the radiation doctor and the main cancer doctor will plan the imagery test that will be needed to see how successful the radiation was for shrinking the tumor.

Our Medical Update

It was a long morning at the hospital. We got behind at the radiation deal and that cascaded everything backwards. But, we are finally home.

Radiation  went okay once they got things working and going. Sandi has four more treatments and that will be it.

Sandi's blood work seemed to be okay. They are double checking a couple of things as they seem a little too good to be true. But, if the results are confirmed things look amazingly good blood wise.

Doctor was pleased about how she is doing.  The current plan is for her to come back in three weeks and do the usual visit. At that point and after consulting with the radiation doctor they will have an idea as to how we go forward. Indications right now are that an MRI will be done in very late August or early September so they can measure the tumor in her spinal area and see if it has shrunk like it was supposed to do. After that is done what we do next will be determined.

So, all we know for sure is once the radiation is done we should have a couple of weeks break from going down to the hospital and doing anything. That will be nice.

One Too Many Straws

I know there are folks way worse off, but I am so fed up. Hospital just called, and according to the voice mail from some pre registration clerk, we have to pay at least $175 Wednesday for them to allow Sandi to have the MRI. Money we don't have.